In the beginning of our life with type 1 diabetes I would cry in the shower...
The shower seemed like a good place to vent my fear, frustration and utter lack of confidence. I would emerge reborn having dumped my anxiety down the drain. The guilt and pressure would of course build up again but the venting would usually hold me over for a week or so. During that time I believed that this was how my life would always be. Every time Arden's blood sugar was too high, too low or just plain all over the place, I would think...
"Well, that's just diabetes. There is nothing I can do, it's out of my hands."
Here's the secret though. That's not just diabetes. At least it doesn't have to be.
This blog and the people reading it saved me from that life but not perhaps in the way you might imagine. If you were to go back a decade and read my posts you would see a person struggling as I've described here. The blog was a raw nerve, a mirror to my worst moments, periodic trumps and ardent fears. I would have an experience and then write about it. It was cathartic for me and the readers felt supported because they saw their lives in mine. This was my original concept of what a blog was for and what community meant. I would share my life transparently and you got the relief that came with knowing that you weren't alone. My daughter's A1c was 9, yours sucked too and we all felt the momentary relief of sameness.
My idea of community has grown
I would make incremental yet unsatisfying improvements to Arden's care. We got an Omnipod insulin pump and her A1c went down, we cut out some foods and it went down again. Still, no great shakes just lower. Eventually Arden got a Dexcom CGM but all that seemed to do was enforce the notion that I sucked at taking care of my daughter's disease. Then one day our nurse practitioner told me that the biggest hurdle in type 1 diabetes management was fear.
More specifically. The fear of insulin
Those words clicked in my head and I began to force myself to not be afraid. This was no small feat as you are reading the thoughts of a person who caused two seizures in their daughter. Twice in the beginning years with type 1 diabetes I gave Arden too much insulin and she had a seizure. Today I realize that it wasn't the insulin that caused the seizures, at least not completely. It was my ignorance about how the insulin worked. When I realized that... everything began to change.
Arden's A1c went from 9 to 8.5 to 8 to 7.5 to 7 to 6 to 5.6
I figured it out. The next question was what is "it" and more importantly how do I share it with you without the platitudes that often strangle our community. Have you ever heard that, "marriage takes work" or been told to "enjoy this... it goes by so fast"? People love to say stuff but then not give you any details. Have you ever wondered why we don't speak with more detail? I think that some stuff doesn't require more so we don't offer more. We also often don't have the luxury of the time it takes to fully explain. Diabetes however deserves and requires the next level of the thought to be shared, for time to be taken. The tried and true methods should be given to anyone who is interested in knowing them. The problem is that it would be a lifetime of blog posts or a library full of books that you could never read. Still, what if you read the answer but couldn't apply the information or didn't quite understand and needed one more example. We say crap like, "well, that's just diabetes" because it's difficult to do more and those platitudes rob us of hope. One day I got tired of accepting that and wanted to do more. I threw out the old chestnut that tells us that everyones diabetes is different and that experiences can't be thoughtfully applied to others. I ignored that trope because it is not completely true and I knew that I could find a way to extract the basic tenants of diabetes and apply them to everyone. Once I did that the next step was to give the ideas the weight that they deserved and the thoughtful explanation that they required. Above all else, I wanted to provide real tools that were easy to use for the people who were ready to try and hope that one day they would be ready to those who weren't quite there yet.
A Phone call
When you share online people sometimes contact you to ask questions. As you can tell by this post I can get wordy when I write. So one day when I received a question from one of you and I responded, "maybe just call me". The first time that I spent a half hour on the phone with a stranger explaining the tenants that I use in the day-to-day management of diabetes... it felt weird. That strange feeling was replaced a few days later when that person contacted me again to say that they understood. They made the changes that we spoke about and their child's blood sugars were suddenly and markedly better. I asked that person to keep in touch. I say that to everyone today. "Keep in touch... let me know how this worked out". I say it to everyone for two reasons. 1. I really do care and 2. your feedback helps me the next time that I speak to someone. When that first person reached back out six months later with a significantly reduced A1c I thought, "I wish I could talk to everybody at the same time.".
So I started the Juicebox Podcast
The episodes of the podcast are self-contained, organic conversations that will help you to get to a better place with diabetes. But that isn't the real benefit of the podcast. Those episodes when combined reflect my continued maturation as a person living with diabetes. They are powerful separately but together they are an organic conversation that grows and builds and teaches - both me and the people listening. I never would have believed that it would be so powerful but I see it today in your social media posts, reviews and personal letters.
Here's what I know. When I am Bold With Insulin my daughter's life is better. She is healthier, happier and less burdened by diabetes. I then take what I've experienced and we talk about it on the podcast. You will absorb information and begin to apply ideas in no time. I've tried to replace those hope draining platitudes with simple ideas supported by easy to understand details about how to make them work. I'm not a doctor but I do have a decade of crowd- sourced experiences and a knack for explaining them.
You can help to shape how people talk and live
There are three people reading this post. Those of you who are already being bold, those who want to be and those who aren't sure if you can. If you you're already there, please help to keep the platitudes out of the diabetes conversation. Be supportive without being reductive and encourage people to be bold. If you know the there is more to diabetes than what you've been told. If you can feel it in your gut but can't quite bring it into reality. Please listen to the podcast. If you think that I'm full of crap or just can't imagine things being better. Please, take a leap of faith. A better life is waiting on the other side.
Be Bold With Insulin - Listen to the Juicebox Podcast
You can also listen on your favorite podcast app by searching for Juicebox Podcast. The podcast is completely free for all listeners.